Thoughts, wonderings and writings from a life on the spectrum

Being autistic does not necessarily make you an expert on autism.

It’s a phrase that gets thrown around online a lot. Originally it was “the only people who can be experts on autism are autistics” (I disagree with that one as well but at least the wording is more reasonable) and somewhere along the line it ended up as “autistic people are experts on autism” – a much more concrete statement that is largely untrue.

I can’t begin to count the number of autistic people I’ve seen leave comments on threads and forums online that made me realise they actually know very little about both the full spectrum of the disorder and of the history of autism. From the individual who believe that Autism Speaks came up with the puzzle piece symbol to oppress autistic people (they didn’t, it was The National Autistic Society in 1963 and they had much more benign reasons for choosing a puzzle piece), to the people who believe that Asperger’s Syndrome was created for the sole purpose of appeasing “white, middle class families”, to the commenter who responded to a question about differentiating P.E lessons for autistic students with “I don’t see why you’d need to change anything, just make sure it doesn’t get noisy” (assuming that hypersensitivity to noise is the only possible problem that autistic people could have with accessing a P.E lesson), to the person who claimed that because they knew lots of autistic people who were married and in successful jobs that meant that the majority of autistic people are also in that position.

Having a disorder does not automatically make you an expert in that disorder. It doesn’t even necessarily make you an expert in how your own disorder presents. I’m autistic and I only just worked out that if I wear noise-cancelling headphones during lectures (with no music) then the whole experience is so much easier and I am so much more engaged. When I was first diagnosed I had no idea which of my issues came from sensory problems and which were executive dysfunction – I have now spend hundreds of hours reading and working widely in the field of autism, and I’m still not an expert or even anywhere near. For all the complaints many autistic people make about how non-autistic people make assumptions about autism, I’ve seen just as many autistic people who have equally wrong assumptions about autism.

It’s okay to be wrong or misinformed, I know I have been many times, but the key here is to remain open to the fact that you can learn from a range of sources – autistic or otherwise – and never decide that you are an expert who has nothing more to learn. There’s always more to learn.